Tag Archives: Conditions and Diseases

Taking Over once again

In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.

 

So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!

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A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.

 

There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.

Unexpected Greek Treats

We might have packed a suitcase full of a variety of allergy-friendly foods to keep us going during our 10 days in Greece, but, as ever, we kept our eyes open for any M- and G-friendly Greek treats that we could spot in the supermarkets. delicatessens and local shops in Athens and on Syros. I had no doubts that we could find the bare essentials of soya milk, goats’ cheese and rice, but it’s those unexpected finds that make all the difference when we’re travelling as a family.

The first fantastic find, and one that we found ourselves stocking up with to last the duration of our stay, was this unassuming pack of smoked chicken fillet that quickly became a firm favourite with M. Mike had ventured out of our Athens studio one afternoon and found a delightful small deli less than 5 minutes walk away. They had a huge selection of fresh and dried olives, oils, cheeses, breads and cooked meat, but it was the smoked chicken that caught his eye as we had been struggling to find an appetising way to cook and serve chicken for M, who is not the biggest fan of cold chicken at the best of times. The smokey flavour was something new to him and whilst he was prepared to let the rest of the family have a small taste to see just how delicious it was, he insisted that the remaining slices were his and his alone. Mike also discovered these brown rice cakes with pink Himalayan salt, a surefire hit with M and the perfect base for his smoked chicken fillet sandwiches that became a lunchtime staple.

As we had expected, we had no problem in sourcing goats milk, butter and cheese for G in Athens and were also delighted to find both almond and hazelnut milk there too. She quickly fell in love with the traditional Greek Feta cheese and ate it as frequently as M devoured the chicken fillet for lunch. We also found a small selection of gluten-free crisps that they both enjoyed on occasion as just a small snack when needed. However, it was on Syros that we were truly amazed by the unexpected plethora of allergy-friendly foods we found in the very small supermarket in the seaside village of Finikas. When we ventured inside on our first day on the island, we were hoping that we might be lucky to find some soya milk for G to drink and were completely blown away by this astonishing selection of dairy-free alternatives, from almond milk to chocolate soya milk, goats cheese, butter and yoghurt, and the one item we had never expected to find there: rice milk.

This tiny treasure trove also stocked a small, but comprehensive selection of gluten-free products including rice cakes for M, gluten-free pasta, bread and biscuits. We bought a couple of different flavours of the allergy-friendly biscuits that quickly became a favourite with G. These were a welcome treat and alternative to dessert for her especially when accompanied by some small slivers of Feta, whilst M enjoyed the opportunity to pick and devour fresh figs from the trees surrounding our villa at the Good Life. Having discovered these unexpected Greek treats, we made an effort to buy a few extra packs of biscuits and rice-cakes alike to bring back home with us to keep the memory of our Greek adventures alive for just a little longer.

Living the Good Life

Are you more “Tom and Barbara” or “Jerry and Margot” when it comes to your approach to life? There’s no way I could let a reference to this unforgettable 70s British sitcom pass without a gentle nod in their direction, but my blog post is actually all about our exceptional retreat in Syros during our recent Greek holiday. Somewhere that embraces the self-sufficient lifestyle of the Goods and yet provides an experience that even the pickiest Leadbetter would struggle to complain about.

The Good Life Greece is owned by the charming and laid-back Nick, who, despite having called Greece his home since 2004, still speaks with a distinguishable Australian accent and, with the help of his sons also set up a number of small businesses in Athens, including our base whilst we were there, the Athens Studios. Escaping the noise and busyness of the capital city, the Syros villas match the peaceful beauty of their location and gave us a chance to recharge our batteries whilst embracing the simplicity of Greek island life.

Our home for the week was the idyllic Balance villa, a traditional stone house surrounded by vineyards and olive groves. Carefully designed to be sustainable and eco-friendly, the villa was simple with an understated luxury that we all enjoyed. The children were welcome to pick vegetables, hunt for eggs and harvest the figs on the nearby trees; and enjoyed every moment as they explored the grounds around the villa. With 2 bedrooms, a kitchen I’d love to have at home, bathroom and spacious living/dining area complete with TV and DVD player, there was more than enough space to house us all without risk of getting in each other’s way. A beautiful stone patio circled 2 sides of the house with amazing sea views, which we enjoyed on our quiet Sunday “at home” when we spent the day playing card games, listening to music and soaking up the sun in absolute peace.

Before we arrived on Syros, Nick and I had exchanged a couple of emails and I gratefully accepted his offer of a pack of local foods to welcome us to the island. I was so delighted by this decision when we discovered the wonderful array of goodies that filled the fridge and pantry. Fresh fruit and vegetables, goats’ cheese, yoghurt and milk for G, local sausage, cooked meals and chicken kebabs for M as well as eggs, fresh bread and, most importantly, local beer and wine gave us everything we needed for the first few days. Nick also hosted a wine-tasting evening mid-week, where he introduced us to a number of fantastic Greek wines accompanied by a spread of delicious local foods. We met our Dutch next-door neighbours, whose 11 year-old son quickly became great friends with both M and G as well as a willing partner-in-crime!

We loved every moment of our holiday on Syros and would go back in a heartbeat. I am particularly tempted by the thought of a Christmas spent there and, who knows, maybe we’ll make it back before too long.

Marks out of 10: 10/10 without hesitation

Γεια σαυ Αθήνα

It could appear that I’ve been keeping our final summer holiday destination close to my chest, but hopefully the title of this post will have given you some idea of where we headed to get a healthy dose of natural vitamin D and a much-needed complete break from it all. We decided to head somewhere that the children had never been and a country that Mike and I had last visited close to 17 years ago: Greece.

For those of you not yet fluent in the Greek alphabet and language, the above words say “Hello Athens” and that was how we chose to top and tail our trip to this beautiful Mediterranean country, with a few days spent soaking up the history in the capital city. Our early flight from Gatwick meant that we had reached our hotel by mid-morning and were soon ready to get started on our explorations. We stayed at the centrally located Athens Backpackers hostel, which was only a few minutes walk from both the Acropolis and the Plaka. The double set of bunk beds in the bedroom might not be every family’s idea of a great start to a holiday, but we wanted something that gave us easy access to all we were hoping to see in Athens and were delighted with our choice. With a spacious living area, small, but well equipped kitchen and the all-important air-conditioning, this family studio apartment was everything we could have wanted to start off our holiday.

Following in the tried and tested footsteps of previous holidays, our first destination was to buy tickets for the Athens City Sightseeing bus tour and having stopped to grab a quick lunch, with mediocre success meeting the allergy needs of G and M, we set off around this ancient city to pinpoint exactly where we wanted to visit over the next couple of days. One of the highlights of our city stay was, without a doubt, the Panathenaic Stadium, site of a simple racetrack for the original Panathenaic games and latterly home of the first modern Olympics in 1896. It somehow felt fitting to visit this Olympic stadium following so shortly after our trip to the Queen Elizabeth Olympic Park in London for the 2017 IAAF World Championships and M in particular was keen to soak up the history by listening to their comprehensive audio tour. One of the hidden gems there for me was the small museum that housed a number of posters, artefacts and torches from several Olympic Games over the last 120 years. G and I took our time walking around this single room housing numerous treasures and delighted in spotting the posters and torches from all 3 London Olympics Games: 1908, 1948 and 2012.

The children also enjoyed our stop at the Monument of the Unknown Soldier in Syntagma Square, where we watched the changing of the Hellenic parliament guard, who are known as the Evzones. This ceremony is impressive to watch, not only for the incredible historic costume, but also the slow, careful and measured movements that the soldiers make as they take up their official posts for the next 60 minutes.

Travelling to Greece in August had its advantages. Not only did we enjoy constant sunshine and temperatures that could sometimes be stifling in the city, but most Athenians have also gone on holiday and so the queues and crowds were not as big as they might otherwise have been. The one downside was that our holiday coincided with the Feast of the Assumption on August 15 and we were warned that many shops would be closed on the day. However, we planned our day carefully by having a good supply of food in our apartment for lunch and fulfilled M’s desire to visit a local playground, which we found quietly hidden in the beautiful National Gardens located just behind the Parliament buildings.

The holiday starts here

Our trip to London to see the World Athletics had been planned with careful precision to fit in with our much-longed for summer holiday. Whilst we usually try to fly from our local airport, which is a mere 10 minute drive door-to-door for us, we took advantage of being in the London area and instead arranged flights from Gatwick for early on the Sunday morning. I scoured the internet looking for a nearby hotel and parking package, which would allow us to get a few hours sleep before we travelled and included parking for the duration of our holiday. Much to my delight, I managed to find a fantastic deal giving us a night’s stay at the Holiday Inn Worth and valet parking at Gatwick’s North terminal – ideal when your Sunday morning flight requires you to be at the airport for around 2.45am!

It took us a little longer than hoped to journey across London from Stratford and out to Worth, so by the time we arrived, all we really wanted to do was move a couple of key belongings from one case to another, pack our hand luggage for the flight and have dinner before heading to bed for as much sleep as we could manage ahead of our middle-of-the-night wake-up call. Whilst I sorted the cases and G and M emptied, sorted and repacked their backpacks, Mike was tasked with the job of investigating the hotel restaurant to see if we could just stay put and successfully feed both children there, or if a quick internet search was required to find somewhere safe to eat in relatively close proximity. Thankfully the hotel restaurant, Lytton’s Bar and Brasserie, assured us they could cater for both children, despite the seeming lack of allergy-friendly options noted on their menu and so we settled down for an early dinner.

G opted for her perennial favourite of a medium steak with salad and chips, which we had confirmed would be okay for her, whilst the chef worked his magic to prepare grilled chicken with pilau rice and a side of cucumber for M. For those slightly more eagle-eyed amongst you, you might notice that there were some peas mixed into M’s rice, something that is definitely not yet on his safe foods list. We had agreed with our local gastro consultant that we would relax M’s restricted diet a little when away and whilst we might not have necessarily chosen to kick that trend off before we even left the UK, sometimes you just have to go with the flow and live life to the fullest. By the time we got to the end of the meal, both plates were more or less cleared and we were delighted to have once again found a great option for an allergy-friendly meal without too much hassle.

Mike quickly fell asleep, but the children and I decided to lie in bed watching the relay finals and celebrated quietly the huge success of the British squad, whilst commiserating over the unexpected injury of Bolt, who we had seen perform to his usual phenomenal standard that very morning. Excitement over, we drifted off to what little sleep there was left to grab before my alarm went off 1.35am and our holiday really started. We made it to Gatwick in good time and got ourselves checked in without too many problems around the extra suitcase of food and medicine that we had once again arranged to carry free of charge with Easyjet. Both G and M managed extremely well given our early start and we were soon to be found sitting in the airport Starbucks, enjoying our drinks of choice and playing a few rounds of the newly acquired Marvel Avengers Top Trumps and other travel games. Our holiday adventures were about to begin!

Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

Shocking Customer Service

At first glance, these look like great plates of food. These reflect a restaurant that has obviously understood our allergy requirements and nailed it. Right?

Actually, these represent a lunch that almost didn’t happen. An experience that certainly left a bitter taste in my mouth and almost resulted in an outright refusal to stay anywhere that could treat an allergy family so badly. I’m a keen proponent of giving praise where it’s due, especially in the world of free from eating out, but rarely will I actively name and shame those who get it so absolutely wrong. However, I am so incensed by our bad experience that I just couldn’t stay quiet this time.

We recently found ourselves in the Somerset town of Street, home to the Clarks village outlet stores and decided to head in to see if we could pick up any last minute bargains ahead of our summer holiday. Having arrived and parked our car, both children started mumbling about a need for food and we decided to start our shopping trip on a good note and have lunch. Whilst the map indicated that G’s favourite, Pizza Express, could be found on the far side of the shops, we thought we’d give a brand new eating out experience a try and opted for Frankie and Benny’s instead.

It has been a long, long time since we last ate there and, to be perfectly honest, it will be an even longer time before I choose to step foot in one of their restaurants ever again. We asked for their allergy menu, made some key choices and then waited for our waitress to arrive to start the ordering process. G was keen to have their GF pepperoni pizza and eager to exert her new-found confidence by ordering her own complicated requirements. And that’s where the problems began.

G asked to have their GF American Hot, without chillis and replacing the mozzarella with goats cheese, something we do the world over and something that has never been a problem. The waitress said that wasn’t possible and, when we explained that we needed the pizza to be both gluten- and dairy-free, she shrugged her shoulders saying that the pizza wouldn’t be dairy-free if we replaced the normal cheese with goats cheese instead. I patiently explained that G has a problem with the cows’ milk protein and can in fact tolerate goats cheese ok. The waitress walked off to “check the label” in the kitchen, before marching back to triumphantly announce that the label said it contained milk, so we couldn’t make that change.

I’ll be honest, I was slightly frustrated by now and so asked if it was possible to either see the goats cheese they use or perhaps instead, talk to the manager. I was polite in both my tone and my words, but determined that dealing with the restaurant manager would be a safer option for us and so our waitress’ response stunned me. She told me that the manager had told her it wasn’t a safe alternative and when I asked again if we could talk directly to the manager as M’s needs were considerably more complicated, she threw her hands in the air and rather rudely informed me that she was refusing to serve us because of my attitude.

In another time and place, I would have insisted on leaving right then, but I had 2 hungry children to feed and I didn’t want to start the ordering process all over again. Mike took over talking to the manager and the resulting plates of food were the success we needed them to be. We received an apology for our waitress’ attitude and reassurance that they would be very careful in preparing G and M’s lunches. They arranged a special drink for M – lemonade with vanilla- and worked hard to ensure the rest of our experience went without a hitch. I can accept that perhaps our waitress was having a bad week, my work week hadn’t been the easiest either, but for someone working in the service industry to be so dismissive and rude to a customer with additional requirements is completely unacceptable in my book. It’s a shame because both children really enjoyed their meals when they arrived, but if I never go back to Frankie and Benny’s with them, it’ll be too soon.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.